I’m Autistic, And Believe Me, It’s A Lot Better Than Measles

Vaccines don’t cause autism. But even if they did, is being like me really a fate worse than death?

Sarah Kurchak
Feb 6, 2015 · 8 min read

The autistic brain is not particularly good at understanding irony, and yet most people I’ve met on the autism spectrum have, over time, developed a pretty strong grasp of the concept. Many of us have even managed to teach ourselves how to wield it. I’ve begun to suspect that this is due to our constant hands-on experience.

Having an autism spectrum disorder in an ableist world means that you’re constantly exposed to cruel irony. Most frequently, this comes in the form of neurotypical (i.e. non-autistic) people who tell you, incorrectly, that you can’t or don’t feel empathy like them, and then stubbornly refuse to care about your feelings when they claim that you’re lost, that you’re a burden, and that your life is a constant source of misery for you and everyone who loves you. There’s also my current favorite: parents who are willing to put the lives of countless human beings at risk because they’re so afraid that the mercury fairy will gives their kids a tragic case of autism if they vaccinate. Gotta protect the kids from not being able to feel empathy — who cares whether other children live or die?

No matter what other lofty ideas of toxins and vaccine-related injury anti-vaxxers try to float around in their defense, that’s really what all of this is about: we’re facing a massive public health crisis because a disturbing number of people believe that autism is worse than illness or death. My neurology is the boogeyman behind a completely preventable plague in the making.

The anti-vaccination movement is a particularly bitter issue for me because it doesn’t just dehumanize me as an autistic person; it also sets off two of my biggest triggers. Like many people on the spectrum, I don’t handle it well when people are 1) wrong, and 2) unfair.

I’ve always struggled to be patient with people who are clearly and obstinately wrong. Most of my elementary school report cards contained some variation of “Sarah does not suffer fools gladly” and I can’t honestly say that I’ve made significant improvements in that arena since then. And people who refuse to vaccinate their children because they believe that vaccines cause autism are wrong. Andrew Wakefield’s infamous study that linked autism to the MMR vaccine, which first sparked anti-vax panic in 1998, was called into question in 2004 and fully retracted in 2010. Wakefield, who misrepresented or altered the subjects’ medical histories over the course of his research, lost his license that same year. No scientist has been able to reproduce his results. Major studies by The Journal of Pediatrics and the Institute of Medicine have failed to find any link between vaccines and autism.

This should be more than enough to persuade a rational person that vaccines are safe — or at least as safe as any other simple medical procedure — but there is nothing even remotely rational about the anti-vaccination movement. It’s a dangerous and infuriating melange: poorly articulated fears of “toxins,” a failure to understand the difference between correlation and causation, misleading articles on truther websites, and conspiracy theories that would make Fox Mulder and The Lone Gunmen blush. I can’t even begin to wrap my head around anti-vaxxers’ reasoning. How can you find fault with every single bit of evidence that we have, from every single source, about the safety of vaccines? How can you continuously misread every single fact about their contents? How can you disregard the efficacy of vaccines in the fight against deadly and debilitating illnesses across the globe? If you can’t disregard it, how can you not care? If there really is a connection between autism and vaccines — which there’s not — and Big Pharma and/or The Man really are causing autism through vaccinations, what on earth do you think the end game of this conspiracy is?

What upsets me more than the wrongness, though, is the dangerously unfair behavior that results from it. When someone believes asinine things about vaccines, it hurts humanity on an intellectual level. When they put those beliefs into action and refuse to vaccinate their children, it puts all of us at risk of serious illness and death. The current measles outbreak, which has now infected over 100 people in 14 states and is currently spreading into Canada, is a glaring example of what can happen when people put their (ignorant) personal whims against the well-being of their community. Through no fault of their own, unvaccinated children, immunocompromised people, babies too young to receive the vaccination and the occasional vaccinated person (no vaccine is 100 per cent because science is not magic) across the continent are suffering from an infection that was essentially eliminated from the U.S. in 2000. All because a sizable group of mostly-privileged parents have decided that reviving a group of life-threatening diseases and potentially inflicting them on their loved ones and neighbors is infinitely preferable to having an autistic child.

I take the decision not to vaccinate personally. I’ve tried to have empathy for the other side, I’ve tried to tell myself that it’s none of my business, but I can’t and it is. Someone who refuses to vaccinate their children because they’re afraid of autism has made the decision that people like me are the worst possible thing that can happen to their family, and they’re putting everyone at risk because of it. I’ve been told by some anti-vaxxers that they don’t mean my brand of autism; they mean non-verbal autism, or as they are so fond of calling it, “profound autism.” I’m not about to take any solace in the idea that they’re willing to make exceptions for autistic people who can perform as neurotypical, or at least pose as little annoyance to neurotypicals as possible. That just means that I will cease to be of any value to these people if I am no longer able to pass as one of them, and that they see no value and no humanity in anyone who communicates or behaves differently from them. Tell me again who has the empathy problem?

The best that I can muster in the anti-vaxxers’ defense is that they’re not 100 per cent responsible for the anti-autism sentiment fueling their movement. The idea that autism is an unparalleled tragedy didn’t happen in a vacuum. It came from the very people who claim to support us.

Take Autism Speaks, for example. The world’s most prominent autism-related charity has a pretty cuddly exterior. Celebrities toss money at it. People wear blue things to help it raise awareness. It claims to help autistic people and their families. Why would anyone question its intentions? It would be absolutely absurd to run a charity for people you hate, after all. Right?

But Autism Speaks isn’t really a charity for autistic people. It’s a charity for neurotypical people who have been afflicted with the horror of having autistic people in their lives. Since its inception in 2005, Autism Speaks has perpetuated the idea that people with autism are a burden and somehow “lost,” and they’ve refused to listen to any actual autistic people who disagree with their party line. It’s supported a number of dangerous and dubious treatments, like electroshock therapy and chelation, a lead poisoning treatment that has many risks and no proven benefit as an ASD cure, all in the name of making autistic people appear more neurotypical. Its official statements consistently refuse to acknowledge any humanity in autistic people, or recognize that their families experience anything other than abject misery. In its 2013 Call For Action, founder Suzanne Wright, who has an autistic grandson, wrote that families with an autistic member “are not living. They are existing. Breathing — yes. Eating — yes. Sleeping — maybe. Working — most definitely — 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.” And honestly, that’s one of the less offensive things she’s said about us.

This is far from true for the countless families who have spoken out against Autism Speaks. It’s certainly not the case for mine. We are all, last I checked, living. We work together to bridge our differences in communication, sensitivities, attributes, and detriments to go about our lives in a way that expands far beyond the moment-to-moment. We’re no more or less imperfect or tragic than the average family. We don’t even have measles. I have good days where my strange and intense interests give me a unique perspective in my writing and my focus helps me get it down on paper. I have bad days where I can’t ride public transit without having a panic attack and I have to leave the room when my husband chews food because I find the sound of it unbearable and overwhelming. I have stimmed to my heart’s content and I have hit myself. Throughout all but the worst of it — depression is a common comorbidity of autism, likely because living in the neurotypical world is often trying — I’ve been pretty sure that I am “living,” and better for it. Throughout all of it, my loved ones have preferred my autism to my possible illness or death, or the deaths of others. I’d say I was grateful, but really, this should be a given.

Autism Speaks is currently urging parents to vaccinate their children, though it was funding and supporting vaccine-related research as recently as 2009. But it continues to spout the kind of anti-autism rhetoric that made people who aren’t so great with critical thinking so scared in the first place.

I’m not sure what the cure is here. Anti-vaxxers are very dedicated to being wrong. As The New York Times’ Brendan Nyhan discovered last year, they’re more resistant to irrefutable facts than vaccinated kids are to preventable diseases. But I’m at least a little bit hopeful that renewed interest in anti-vaxxer rhetoric, spurred by the current measles outbreak, will inspire a more thorough discussion about autism like Anne Theriault’s and Jen Zoratti’s excellent work on the topic (full disclosure—I’m quoted in the latter piece)—and that this discussion will do some good. For starters, we could talk about people on the spectrum like we’re better than measles, like we’re human, or like we’re there at all.

Long before the fear of autism threatened everybody’s lives and well-being via the anti-vaccination movement, it threatened the lives and well-being of autistic people through isolation, improper treatment, and even outright murder. Even if we can’t eliminate these deaths — and I hope to Temple Grandin that we can — the way that people respond to the current public health clusterfuck still offers us a chance to save lives.

The Archipelago

Stories about who we are, together and alone.

Sarah Kurchak

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Autism, pop culture, MMA, fitness/mental health, and Man From U.N.C.L.E.

The Archipelago

Stories about who we are, together and alone.